Bioethics of Archival Human Temporal Bone Collections

项目摘要 在研究约翰霍普金斯大学人类颞骨组织学档案幻灯片收藏的历史中 在20世纪初到20世纪中期获得的，出现了几个关于历史和伦理的问题 在不太复杂的时期获取死后颞骨标本的同意程序 比今天的标准更好的实践。此外，我们的收藏还包括某些群体的过度代表性 历史上被边缘化的患者，他们可能受到不同的生活条件，结构性的 不平等和医疗。我们将考虑历史、环境、地理、社会和 可能导致对非白人个人、妇女、个人的不同待遇的经济因素 残疾人(特别是听力和平衡障碍)、经济困难的个人、 移民、儿童和医疗环境中的老人，因此可能导致了这些 更有可能遭受死亡、尸检和颞骨收获的个体。在.之前 为了让我们团队外的研究人员能够访问这些幻灯片的图像，我们将进行彻底的 评估这些伦理考量，并为未来利用人类时间档案制定指导方针 骨组织学标本研究中。我们的具体目标是：1)进行系统的回顾分析 20世纪人类颞骨捐赠和采购同意的历史和伦理，以及2) 建立一个社区咨询委员会，为有关约翰·霍普金斯临时医院未来使用的决策提供信息 骨组织学玻片收集和未来的颞骨收获和数据共享。确保我们的工作 根据不同的观点，我们将包括来自历史上被边缘化群体(个人)的研究人员 在生物伦理学研究过程中(包括 包括合作调查员和实习生。我们计划聘请社区代表，以确保人类 颞骨研究以伦理、包容和文化敏感的方式进行，同时也在工作 目标是产生更能代表美国多样化人群的耳病理学数据，而不是 在过去。拟议的项目是专门针对生物伦理研究的。

Project Summary In researching the history of the archival human temporal bone histology slide collection at Johns Hopkins procured in the early through mid 1900s, several questions arose regarding the history and ethics of the consenting process for obtaining postmortem temporal bone specimens during periods with less sophisticated practices than today's standards. Additionally, our collection includes an over-representation of certain groups of historically marginalized patients who may have been subject to disparate living conditions, structural inequities, and medical treatment. We will consider the historical, environmental, geographical, social, and economic factors that may have contributed to disparate treatment of non-white individuals, women, individuals with disabilities (in particular, hearing and balance disorders), economically disadvantaged individuals, immigrants, children, and the elderly in medical settings, and, consequently, may have rendered these individuals more likely to have been subject to death, postmortem autopsy, and temporal bone harvest. Prior to making images of these slides accessible to researchers outside our group, we will perform a thorough assessment of these ethical considerations and develop guidelines for the future use of archival human temporal bone histology specimens in research. Our specific aims are to 1) perform a systematic retrospective analysis of the history and ethics of consent for human temporal bone donation and procurement in the 1900s, and 2) develop a community advisory board to inform decisions regarding the future use of the Johns Hopkins temporal bone histology slide collection and future temporal bone harvest and data-sharing. To ensure that our work is informed by diverse perspectives, we will include researchers from historically marginalized groups (individuals who identify as women, non-white, immigrants, deaf/hard of hearing) in the bioethics research process, including both co-investigators and trainees. We plan to engage community representatives to ensure that human temporal bone research is performed in an ethical, inclusive, and culturally sensitive manner while also working toward the goal of generating otopathology data that is more representative of the diverse U.S. population than in the past. The proposed project is specific to bioethics research.